This weekend has been filled with pleasant surprises. Yesterday, we took one of K's friends with us to the Home Depot Kids' Workshop. I love the Kids' Workshop, the projects are simple enough for the kids to get confident with using hand tools; and the projects, the apron, and the pins for finishing the projects are free. This month's project was a little shelf to store Hot Wheels type cars on it, apparently in honor of the upcoming Daytona 500. Both K and L really enjoyed building their shelves (but K owns no Hot Wheels cars, and I suspect L does not either). After we got done, we went to drop L back off at home, and were invited in for lunch. Very pleasant surprise. The girls played together while the three of us adult had a great conversation in the kitchen.
This morning at church is where the next pleasant surprise took place. We had invited our friends to join us at church a few weeks ago and they came today. They all seemed to enjoy the service (and the kids enjoyed Sunday School). It was a really busy day at church today. There were two baptisms, we welcomed four new members, and we also had communion. And we in the choir sung the challenging Haydn piece. This piece is particularly challenging for altos and basses, as both the alto and bass parts are often at higher pitches than the sopranos and tenors. That high E note? Nope, can't hit it, even when standing on my tiptoes. We got through the piece, but I think I would have liked a few more rehearsals of it to get more comfortable.
After church, K continued her sale of the Girl Scout cookies. We turn the pre-orders in tomorrow. There was also an all church potluck to welcome the new members. It was a nice relaxing early afternoon. After we got home, K wanted to watch the Puppy Bowl and the Kitty Halftime Show. Near fatal amounts of cuteness is the only way one can describe that show. It was fun watching it with her. Then we watched the Superbowl. Congratulations to the Saints and their fans. I wanted the Colts to win, mostly because I am heartbroken over the Vikings losing the NFC Championship again. But, oh well, obviously the Saints wanted it more than the Colts.
Tomorrow, we are going whale watching with the Girl Scout troop. I am excited, and so is K. I have to try and get some sleep tonight or I will be a hurting unit tomorrow. Goodnight.
Sunday, February 7, 2010
Friday, February 5, 2010
Happy Cancer Anniversary to Me!
Today is the twenty third anniversary of one of three days that changed the course of my life forever.
Tears were streaming down his face when he said, "You have Hodgkins Disease." He did not say the c word, even when pressed. We asked what we were to do next and words like further testing, surgeries, and oncologist were uttered. I left Dr. Gozum's office in a fog. I called Dr. Salmi (my general practitioner) to try and get in later that afternoon to figure out what we were to do next. The receptionist told me there was nothing open. My mom took the phone from me, and rather bluntly told the receptionist to open something up because I had just been diagnosed with cancer and we needed to get some answers. Miraculously something just happened to be open at the end of the day.
Dr. Salmi DID say the c word. He also had recommendations for two different oncologists, both out of the same practice. One male, one female. He had a higher recommendation for the male, Dr. Sborov. So, because I had no issue with male doctors, I chose him. This turned out to be an excellent choice for a number of reasons that may be revealed in a later post.
It is really weird how I can remember the details of that day. Because I have always had kind of a muddy memory for stuff like this. The sun was shining that day when we went to both doctor's offices. Between appointments, we went to Applebee's for lunch (and for years, I could not set foot in an Applebee's because it was too emotionally painful, in retrospect we should have went to Bennigan's because they are all out of business now!) Sunny days in February are actually fairly infrequent in Minnesota. Sunny days in February that are not accompanied by subzero temperatures and windchills are exceedingly rare. It was sunny and warm (by Minnesota winter standards).
I remember going to visit some friends at the House of Too Many Rooms that evening and breaking the news to everyone and just crying in the living room of the house. I am grateful that I am still friends with a lot of the people that were there that evening. I am also exceedingly grateful that they were all there. I would have never made it through all that without their love and support. They loved me when my body was broken and dysfunctional. They loved me when my hair was falling out, and when my skin was burned so bad from the radiation that it had turned purple. They loved me when I was overcome by all the emotional shit one goes through when faced with catastrophic illness. They allowed me to just be where I was at, no judgment, just love. And they helped me fight. I have a special place in my heart, always, for one person in particular, who, by serendipity, was closest to me through this, and handled the intensity of it all with grace, sensitivity, and humor. My friends and family were strong when I could not be.
The next month was filled with doctor appointments, "minor" procedures (both the lymphangiogram and the bone marrow biopsy could be classified by the Geneva Convention as torture modalities), CT scans and ultimately the abdominal surgery, which removed my spleen, my appendix, and several lymph glands. The cancer had not advanced to my abdomen. I started my radiation therapy when I was still in the hospital recouperating from the abdominal surgery.
My life became daily trips to the hospital for my rads, daily fluoride treatments for my teeth because my saliva glands were knocked out by the radiation, and weird dietary considerations because most foods were too difficult to swallow. For months, I lived on mashed potatoes, gravy and Ensure "shakes". Note to anyone who may end up having to drink Ensure for their nutrition: avoid the strawberry flavor. I joined support groups, I took a leave of absence from work, I hung out with and clung to my friends, and I went to the doctor, a lot. I was thin even before the cancer, but because I was not able to eat a variety of foods, I lost weight and became rather anorexic looking. Real sexay....not! In those days, I looked like walking death. It was really frightening to look in the mirror.
I am still not really all that sure if the old adage, "what does not kill you makes you stronger" is true. I survived it, but still have a lot of lingering baggage from it, both physical and emotional. I am not sure one ever truly gets over cancer.
Tears were streaming down his face when he said, "You have Hodgkins Disease." He did not say the c word, even when pressed. We asked what we were to do next and words like further testing, surgeries, and oncologist were uttered. I left Dr. Gozum's office in a fog. I called Dr. Salmi (my general practitioner) to try and get in later that afternoon to figure out what we were to do next. The receptionist told me there was nothing open. My mom took the phone from me, and rather bluntly told the receptionist to open something up because I had just been diagnosed with cancer and we needed to get some answers. Miraculously something just happened to be open at the end of the day.
Dr. Salmi DID say the c word. He also had recommendations for two different oncologists, both out of the same practice. One male, one female. He had a higher recommendation for the male, Dr. Sborov. So, because I had no issue with male doctors, I chose him. This turned out to be an excellent choice for a number of reasons that may be revealed in a later post.
It is really weird how I can remember the details of that day. Because I have always had kind of a muddy memory for stuff like this. The sun was shining that day when we went to both doctor's offices. Between appointments, we went to Applebee's for lunch (and for years, I could not set foot in an Applebee's because it was too emotionally painful, in retrospect we should have went to Bennigan's because they are all out of business now!) Sunny days in February are actually fairly infrequent in Minnesota. Sunny days in February that are not accompanied by subzero temperatures and windchills are exceedingly rare. It was sunny and warm (by Minnesota winter standards).
I remember going to visit some friends at the House of Too Many Rooms that evening and breaking the news to everyone and just crying in the living room of the house. I am grateful that I am still friends with a lot of the people that were there that evening. I am also exceedingly grateful that they were all there. I would have never made it through all that without their love and support. They loved me when my body was broken and dysfunctional. They loved me when my hair was falling out, and when my skin was burned so bad from the radiation that it had turned purple. They loved me when I was overcome by all the emotional shit one goes through when faced with catastrophic illness. They allowed me to just be where I was at, no judgment, just love. And they helped me fight. I have a special place in my heart, always, for one person in particular, who, by serendipity, was closest to me through this, and handled the intensity of it all with grace, sensitivity, and humor. My friends and family were strong when I could not be.
The next month was filled with doctor appointments, "minor" procedures (both the lymphangiogram and the bone marrow biopsy could be classified by the Geneva Convention as torture modalities), CT scans and ultimately the abdominal surgery, which removed my spleen, my appendix, and several lymph glands. The cancer had not advanced to my abdomen. I started my radiation therapy when I was still in the hospital recouperating from the abdominal surgery.
My life became daily trips to the hospital for my rads, daily fluoride treatments for my teeth because my saliva glands were knocked out by the radiation, and weird dietary considerations because most foods were too difficult to swallow. For months, I lived on mashed potatoes, gravy and Ensure "shakes". Note to anyone who may end up having to drink Ensure for their nutrition: avoid the strawberry flavor. I joined support groups, I took a leave of absence from work, I hung out with and clung to my friends, and I went to the doctor, a lot. I was thin even before the cancer, but because I was not able to eat a variety of foods, I lost weight and became rather anorexic looking. Real sexay....not! In those days, I looked like walking death. It was really frightening to look in the mirror.
I am still not really all that sure if the old adage, "what does not kill you makes you stronger" is true. I survived it, but still have a lot of lingering baggage from it, both physical and emotional. I am not sure one ever truly gets over cancer.
Wednesday, February 3, 2010
Weird Aniversaries (this gets a little graphic - avoid if you are squeamish)
It was 23 years ago today that I had the original biopsy. Today is very bittersweet. At the time, I already knew deep down inside that I had cancer, but had two more days to pretend I didn't. I still wonder what my life would have been like without the diagnosis and treatment of the Hodgkins Lymphoma. Would I have better lung function? Would my energy levels be more normal? Would I be more fearless in life? And more questions I will never have the answers for.
I am grateful that my surgeon had done some training in plastic surgery, so it lessened the visual impact of the big scars on my neck. This same surgeon later did my rhinoplasty after I had broken my nose in a construction mishap. Amazing doctor and an even better human being. When my mom and I (I was 22 years old and very single) met with him to get the awful diagnosis, he was crying right along with us. He said, "I was so sure it was benign when I was operating. It LOOKED benign." I am sure he is retired by now, but if he is not, I highly suggest Dr. Gozum in the Twin Cities area, if you ever need an otolaryngologist (ear, nose, and throat specialist).
I wish I had been writing in a journal back then, I think it would be interesting to read about where my head was at back in those difficult days. I do know there were moments that I thought of ending it all, but I talked to the right people and got the help I needed to get over it. To be honest, I could not bring myself to do it. I do remember people trying to make long range plans with me. I had to tell them that I was unable to make long range plans, and could they call me right before the activity and I would tell them whether I felt up to it. I am sure it was frustrating for my friends. I know it was frustrating for me.
I remember losing half of my hair (I had radiation therapy and lost all the hair in the radiation field). I lost the hair from just above the notch on the back of my skull and down from there. Thankfully I had long hair at the time so I was able to "cover it up" well. It was a weird sensation when a fan blew up under my hair, to the skin that was not used to being bare.
The nausea during the second phase of my radiation therapy was more than unpleasant. All of my life, I have had a phobia about vomiting, and here I was, vomiting all the time. I still have that phobia. I will move heaven and earth to avoid puking. As a result, I have not puked since the early 1990s.
I still have the low blood pressure that I got during those days. I have to be careful when I stand up, so I don't pass out from the blood pressure dip. Funny story about that - I was at a club with some friends during my treatment, and someone walked up to me and asked me about how long the doctors gave me to live. I stood up too fast (deliberately) and fainted. Freaked the nosy person out, then I told them that I had at least 50 or 60 years left. If I could not laugh about it all, I would have been crying all the time. I also played a prank on my boss. When I was losing my hair, one day, my boss walked by my cubicle and asked me how I was doing. I grabbed a chunk of my hair, pulled it out, and said, "this job is driving me crazy!" He turned whiter than a twice bleached bedsheet, and said, "please tell me that was going to come out of your head anyway!" We had a good laugh about that. I had to find things to laugh at, while going through all of the crap. It was the only way I could have survived.
Obviously, it was not all fun and games. One of my friends had a "skating party" around Lake Calhoun toward the end of the first phase of my radiation therapy. So we went and rented skates (or Rollerblades for those inclined) at Rolling Soles, and proceeded to skate around the lake. I got about halfway around the lake and I could not go any further. So I had to sit and wait until someone had gotten back to the skate rental place, and pick me up in the car and take me back. I was such a buzzkill. I felt awful that I felt so awful that I could not get around the stupid lake. It is only 3.2 miles around.
OK, enough trolling down memory lane for today. Perhaps in a later post we can go into the dietary weirdness that was my life in those days.
I am grateful that my surgeon had done some training in plastic surgery, so it lessened the visual impact of the big scars on my neck. This same surgeon later did my rhinoplasty after I had broken my nose in a construction mishap. Amazing doctor and an even better human being. When my mom and I (I was 22 years old and very single) met with him to get the awful diagnosis, he was crying right along with us. He said, "I was so sure it was benign when I was operating. It LOOKED benign." I am sure he is retired by now, but if he is not, I highly suggest Dr. Gozum in the Twin Cities area, if you ever need an otolaryngologist (ear, nose, and throat specialist).
I wish I had been writing in a journal back then, I think it would be interesting to read about where my head was at back in those difficult days. I do know there were moments that I thought of ending it all, but I talked to the right people and got the help I needed to get over it. To be honest, I could not bring myself to do it. I do remember people trying to make long range plans with me. I had to tell them that I was unable to make long range plans, and could they call me right before the activity and I would tell them whether I felt up to it. I am sure it was frustrating for my friends. I know it was frustrating for me.
I remember losing half of my hair (I had radiation therapy and lost all the hair in the radiation field). I lost the hair from just above the notch on the back of my skull and down from there. Thankfully I had long hair at the time so I was able to "cover it up" well. It was a weird sensation when a fan blew up under my hair, to the skin that was not used to being bare.
The nausea during the second phase of my radiation therapy was more than unpleasant. All of my life, I have had a phobia about vomiting, and here I was, vomiting all the time. I still have that phobia. I will move heaven and earth to avoid puking. As a result, I have not puked since the early 1990s.
I still have the low blood pressure that I got during those days. I have to be careful when I stand up, so I don't pass out from the blood pressure dip. Funny story about that - I was at a club with some friends during my treatment, and someone walked up to me and asked me about how long the doctors gave me to live. I stood up too fast (deliberately) and fainted. Freaked the nosy person out, then I told them that I had at least 50 or 60 years left. If I could not laugh about it all, I would have been crying all the time. I also played a prank on my boss. When I was losing my hair, one day, my boss walked by my cubicle and asked me how I was doing. I grabbed a chunk of my hair, pulled it out, and said, "this job is driving me crazy!" He turned whiter than a twice bleached bedsheet, and said, "please tell me that was going to come out of your head anyway!" We had a good laugh about that. I had to find things to laugh at, while going through all of the crap. It was the only way I could have survived.
Obviously, it was not all fun and games. One of my friends had a "skating party" around Lake Calhoun toward the end of the first phase of my radiation therapy. So we went and rented skates (or Rollerblades for those inclined) at Rolling Soles, and proceeded to skate around the lake. I got about halfway around the lake and I could not go any further. So I had to sit and wait until someone had gotten back to the skate rental place, and pick me up in the car and take me back. I was such a buzzkill. I felt awful that I felt so awful that I could not get around the stupid lake. It is only 3.2 miles around.
OK, enough trolling down memory lane for today. Perhaps in a later post we can go into the dietary weirdness that was my life in those days.
Monday, February 1, 2010
Monday Frustrations
A. (the leader of the Brownie Troop) and I met up today to go check out the Tucker Wildlife Sanctuary to see if this was a facility where we could have our Bridging Ceremony in June. I Googlemapped the location and got driving directions from the Girl Scout Council office (which is across the street from A's office), since the preserve is closer to A's office than my house.
Got to the Council office and we were on our merry way. Until we got onto Modjeska Canyon Grade. Ho Lee Crap is that road ever treacherous. I understand it is a paved narrow canyon road, but there were places that there was not any distance between the road and the dropoff into the canyon (we are talking less than 6 inches of "shoulder"). These are the kinds of roads that if I am not driving, which I was, I would be hiding under the seats of the car. Beautiful country, crazy scary roads!
We get to Tucker and there is a big sign that says they are closed on Mondays. A. had called last week and spoke to someone there and told the person working there that we would be there on Monday to check it out and the person failed to tell her that they are closed Mondays. So we were rather frustrated. We got out of the car anyway and took a look around. It has some nice mellow hiking trails, so our girls could go on a hike while we visit. The elevation is not extremely high, so we would not have to worry about hypoxia. I get breathless at about 3000 feet elevation, and the elevation of the preserve is at about 1500 feet. The interpretive center looked really neat with microscopes and all sorts of things to look at with regards to the flora and fauna of the area. There were all sorts of signs hung up warning people to watch out for poison oak. "Leaves of three - let it be". All in all, it looks like a really cool place to hold an event. We are not sure whether we will do the Bridging Ceremony there, but we will probably do a hike there.
On the way out, we tried to follow the opposite of the directions we had on the way in, but somehow I missed a turn. We ended up on a road that I was at least somewhat familiar with, so we did not get totally lost. When we were on our way in, there is a section of the road that is only about 1 1/2 lanes wide, and of course we met a UPS delivery van at that part of the road (at least it was in the flats, so we did not have to drive into a ditch to avoid the UPS guy). I would hate to have that area as part of my route if I were a delivery driver. I felt like my little HHR was way too big for the canyon road, I would hate to try and navigate it in a delivery van.
Got to the Council office and we were on our merry way. Until we got onto Modjeska Canyon Grade. Ho Lee Crap is that road ever treacherous. I understand it is a paved narrow canyon road, but there were places that there was not any distance between the road and the dropoff into the canyon (we are talking less than 6 inches of "shoulder"). These are the kinds of roads that if I am not driving, which I was, I would be hiding under the seats of the car. Beautiful country, crazy scary roads!
We get to Tucker and there is a big sign that says they are closed on Mondays. A. had called last week and spoke to someone there and told the person working there that we would be there on Monday to check it out and the person failed to tell her that they are closed Mondays. So we were rather frustrated. We got out of the car anyway and took a look around. It has some nice mellow hiking trails, so our girls could go on a hike while we visit. The elevation is not extremely high, so we would not have to worry about hypoxia. I get breathless at about 3000 feet elevation, and the elevation of the preserve is at about 1500 feet. The interpretive center looked really neat with microscopes and all sorts of things to look at with regards to the flora and fauna of the area. There were all sorts of signs hung up warning people to watch out for poison oak. "Leaves of three - let it be". All in all, it looks like a really cool place to hold an event. We are not sure whether we will do the Bridging Ceremony there, but we will probably do a hike there.
On the way out, we tried to follow the opposite of the directions we had on the way in, but somehow I missed a turn. We ended up on a road that I was at least somewhat familiar with, so we did not get totally lost. When we were on our way in, there is a section of the road that is only about 1 1/2 lanes wide, and of course we met a UPS delivery van at that part of the road (at least it was in the flats, so we did not have to drive into a ditch to avoid the UPS guy). I would hate to have that area as part of my route if I were a delivery driver. I felt like my little HHR was way too big for the canyon road, I would hate to try and navigate it in a delivery van.
Sunday, January 31, 2010
Out of the Blue
It is amazing how latent insecurities can be triggered by seemingly insignificant situations.
I am a really tall woman (6'2" currently, used to be 6'3" but there has been some settling of contents during shipment). I have been comfortable being tall since I was in my mid-twenties. Before that I was really insecure, and felt very gangly and ugly. This morning before church, a woman walked by me and said to her husband (loud enough for me to hear), "Gee, maybe I should join a church of midgets!" She was probably about 5 feet tall. Now I know she meant it to be funny, but for some reason today, it totally hit me wrong. And I spent the better part of today feeling really insecure about my height. I know it's trivial, I know I am taking things way too personally, and I am having a difficult time letting this go today. UGH.
I am a really tall woman (6'2" currently, used to be 6'3" but there has been some settling of contents during shipment). I have been comfortable being tall since I was in my mid-twenties. Before that I was really insecure, and felt very gangly and ugly. This morning before church, a woman walked by me and said to her husband (loud enough for me to hear), "Gee, maybe I should join a church of midgets!" She was probably about 5 feet tall. Now I know she meant it to be funny, but for some reason today, it totally hit me wrong. And I spent the better part of today feeling really insecure about my height. I know it's trivial, I know I am taking things way too personally, and I am having a difficult time letting this go today. UGH.
Saturday, January 30, 2010
Snow Day
We went to the Snow Day at the Irvine Great Park today. The lines for everything were really long, but later in the afternoon, the patches of snow were a lot of fun to play in. K built a mini snowman with R, P, and L. Other than being insanely crowded, it really was a good time.
We had a nice picnic with one of the families from church. And we ran into another family from our neighborhood and so all of us hung out for the afternoon, with the kids playing and we adults having very nice conversation. And I got my snow fix, yet again!
We had a nice picnic with one of the families from church. And we ran into another family from our neighborhood and so all of us hung out for the afternoon, with the kids playing and we adults having very nice conversation. And I got my snow fix, yet again!
Friday, January 29, 2010
Snow - Real Snow Below 1000 Feet Altitude Even!
Back in March of 2009, our family started attending church at Irvine United Congregational Church. Everyone there has been so warm and welcoming, and we actually became full members in May. Amongst the recurring events in this church's life are the monthly "Bon Vivant" dinners. On the last Saturday of every month, there are sign ups for hosting and participating in these small intimate dinners. It is a great way to get to know people from church. There has been a big push to start up a family friendly "Bon Vivant", and tomorrow will be the first one.
The family who signed up to host it has decided to host it at the Irvine Great Park. Tomorrow, at the park, they are having a "Snow Day", complete with sledding, ice rink, skate rentals, and opportunities to ride the "Orange Balloon". I need to call the host to find out the particulars (what food to bring, etc.); I am excited about this because I get to satisfy my craving for snow! SQUEEEEEEE!!!
Here is a link to the event! http://www.ocgp.org/2010/01/great-park-snow-day/. Looks to be a lot of fun for all of us.
The family who signed up to host it has decided to host it at the Irvine Great Park. Tomorrow, at the park, they are having a "Snow Day", complete with sledding, ice rink, skate rentals, and opportunities to ride the "Orange Balloon". I need to call the host to find out the particulars (what food to bring, etc.); I am excited about this because I get to satisfy my craving for snow! SQUEEEEEEE!!!
Here is a link to the event! http://www.ocgp.org/2010/01/great-park-snow-day/. Looks to be a lot of fun for all of us.
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